Help please

[jaffacakes]

Sorry I can't create a new topic in the medication area or I'd write in there.

 

We have an apt with the GP tonight at (7.50pm - don't even ask).

 

Ross has now reached the point of kicking and screaming, this has happened over the last few weeks and I have no idea why or how, but he is completely out of control. He answers back "I will hit and kick you" I've threatened to put him outside and he's threatened to break the glass, I think he is strong enough and clever enough to find a 'tool' to do this with. He's only 4.

 

I have used Medised before which I realise may be the only option to us. However even with Medised he can fight it for over 2 hours and does not sleep properly with it - more unconscious than asleep.

 

However, with no diagnosis, what can we ask the GP for? Melatonin?

 

What about Nytol Herbal, the Web says 'not for children' but It contains the same thing as Melatonin?

 

We will be leaving in about 30 minutes, I know this is a big ask, but we really need some help

 

thanks

 

Lynn

[jaffacakes]

Back from GP. I don't know if he was primed or if my 2 inch thick folder and taking partner with me made the difference but the GP gave us the referral without even a second question, just whether we wanted to go to a different trust or stay where we are.

 

Ross behaved himself so well that we didn't ask for anything else but I wish we had. Ross is becoming uncontrollable and now he's at home with me all day I'm really struggling - hit fits of rage are taking a lot out of me.

 

Can anyone offer any help, please?

[trekster]

For me that reaction was to sodium and other types of benzoates in toiletries and food products.

[justine1]

Hi

I would say his behaviour is probably due to the change in routine as he is not going to school.Have you tried to keep some structure to his day?

Now the routine has changed I think you need to explain it to him as best as you can.How does he feel about being at home? Is there no way you can do flexi schooling?That is what I am doing at the moment at least I get a little break from Sam and I still maintain structure when he comes home at lunch until 3pm when I fetch his brothers.He now knows what is expected of him and isnt so confused.

 

It would be good to write out his day on a large poster,from when he gets up until when he goes to bed.Maybe you can also take him for walks etc to burn off some energy.

[westie]

Another lady whose daughter is similar age and diagnosed AS said her daughter was very aggressive for a period (very much more so than usual) and eventually she pinned it down to supermarket brand bread that she had started buying, as it had some ingredient which was known for triggering things like that. She stopped her sandwiches/ bread consumption and things settled down to a more managable level -it may have been sodium benzoate....

 

Is it bedtime that is causing the explosions or something else? Has it always been an issue or recently?

This same lady as above mentioned that moving all toys and stimulating stuff out of the room where she slept really helped her to sleep - just really bed and wardrobe, plain decoration in there. They were fortunate to have a spare room to use as a playroom and not everyone has that option but there may be something that may help if this is the case.

 

Someone else had a routine of having a 'mum and Josh' time card with both pictures on it, and they would give it to the child and then they woudl do an activity together for a time. Then mum would give him a Josh time card with just his picture on. That way he learned over time that when he got the Josh time card he had to stay in bed on his own. His mum also gave him a small boxz with things he liked, and with his picture on the top for him to look at when it was Josh time. Eventually he learned to be more settled. Problems not gone but reduced.

 

Sorry if I am completely off track! I also know many parents who use melatonin with varying results, many more positive comments though .

 

If you really need to sort the problem would be makign another appoinment with doctor to ask about it, even if you don't take your son along. Not sure all GP's will prescribe mind you....

[westie]

Ah just read some of your other posts and thing that the change in routine could be a possible reason for this change in behaviour...

 

Also have you asked for an assessment for a statement of special educational needs, that way you can get a full assessment of his needs, and hopefully find a school that is able to better cope/ more understanding/ meets his needs? As part of this process he will be assessed by EP and maybe even other professionals such as speech and language. Its a long process and may run alongside his other assessment but if a statement can be in place before he has to be in school then he will hopefully fare much better.

 

The preschool years were a nightmare for us - 4 nurseries/ groups all before reception, one he was "expelled" from - for biting, the second I took him out before he was "expelled" again, one was part of an assessment and the other was a group more experienced with special needs so although there were issues they were better able to deal with them, and a bit more understanding in general. He only went a couple of mornings though

[jaffacakes]

Hi Justine, thanks for your reply.

 

Ross is very happy to be at home and I get lots of hugs from him, especially in the morning when he's still a bit concerned about the difference between 'days off' - the weekend, and during the week, he does not want to be at school. He knows why he's not at school and although we've talked about finding another school which he seems happy about he does not seem to miss school at all. He often asks to come home when we are out, which is usually a sign that he's tired and I believe that he's finding socialising very stressful at the moment.

 

I've not really got into a routine, we only started less than a month ago and we've just had a pre-booked holiday for half term. He gets really adjudicated if I try and do any 'school' work, so we're doing lots of play at the moment, barcoding and pricing tins of food for counting in a shop, reading non-fiction as he will only tolerate stories at bedtime. We learnt a bit about Austrailia today, read about types of rocks, minerals and metals from a book he chose from the library, watched Ice Age.

 

To be honest I'm only just coping with having him full time again, it's been over 2 years since he started pre-school and I've forgotten just how demanding he can be. I'm conscious that I need to keep up his education and that he wants to learn, but I still have housework to do and am getting no time for myself - I'm shattered.

 

From another thread: I’ve had a very interesting conversation with Cheshire Autism Support today. Nice lady who sounded like their senior person says that Ross should not go back to school until this is sorted and that Welfare / school should agree – or at least can’t complain much, that we have enough evidence already to ask for phased transition back to school and help when we get there from day 1 and that the Common Assessment Framework (CAF – getting everyone to talk together) is the right way forward.

 

So no, there will be no school until we get this sorted, I don't believe that he could go into any mainstream school without further upset at this point in time.

 

I will write out a timetable with Ross tomorrow, that is a good idea. It will also give me a chance to see what he wants to do, it's a shame it's so cold at the moment, we were out today but it's really too cold for any long walks or bike rides - too cold for me anyway.

 

This bad temper and rage is not new though, perhaps the last few days have been exceptional but he's so out of control I am concerned that he's going to cause real damage, either to himself or us.

[jaffacakes]

Just posted my reply to Justine and there are many others. Thank you.

 

Ross is already free of Benzoate. I have wondered if there might be something 'in his system' but I can't think of anything new. I won't rule it out though, possibly something has been changed and I've not noticed yet. "Here we go again". He is Gluten and Yeast free and till now has no issues with any other foods. I used the Gina Ford method of introducing foods so am sure about things like eggs, milk etc.

 

The obvious thing would be the routine, he's always been wild in the evening and he has always (from very young) hated to go to sleep. You don't hear of many babies under a year capable of making themselves sick when left in their cots - I never left him to cry for more than 10 minutes but one he realised that making himself sick got a response I couldn't leave him at all.

 

We always thought this loathing of sleep was to do with many months of an upset stomach and waking up in pain (before we removed gluten from his diet), but reading about Aspergers I can see we may have been wrong.

 

Perhaps this is something we just have to work through, perhaps by the end of the week he's be happier again, I hope so.

[JeanneA]

Hi sorry to hear you are having problems with your son, I do sympathesise I know what its like. My son Glen is nearly 16 and goes through phases of aggression, he doesn't want to go to School which is happening at the moment. I had to bring him back today, when we got there he was hitting himself in the car, I rang the school the teacher and lsa rang to the car tried talking to Glen but it didn't do any good it was agreed that I bring Glen home and I am to give the teacher a call soon and decide whats going to happen tomorrow.

[Suze]

Hi Jaffa cakes, I,ve had dealings with Cheshire autism and support and found them to be really helpful.There is a support group in chester run by the NAS which is really good and also parent partnership advertise a support group in sandbach, I,d get o their mailing list.My son has problems and anxiety with sleep he is 14 now and at the moment they are,nt as bad.He takes melatonin.In the past during difficult times I have laid beside him and squeezed him tight , talked him through his anxiety, read to him etc etc, anything really to ease the sleep problem for him.It helped my son to go over that days stuff, write it down or talk about it , then he seemed to be able to switch of from it.Hope you find a good school for your son, that can support him better.CASDT should be able to point you in the right direction although they are not allowed to specifically recommend a school.They helped my boy get his high school place at an autism resource , I can,t praise them enough, best wishes suzex.

[Sally44]

Just posted my reply to Justine and there are many others. Thank you.

 

Ross is already free of Benzoate. I have wondered if there might be something 'in his system' but I can't think of anything new. I won't rule it out though, possibly something has been changed and I've not noticed yet. "Here we go again". He is Gluten and Yeast free and till now has no issues with any other foods. I used the Gina Ford method of introducing foods so am sure about things like eggs, milk etc.

 

The obvious thing would be the routine, he's always been wild in the evening and he has always (from very young) hated to go to sleep. You don't hear of many babies under a year capable of making themselves sick when left in their cots - I never left him to cry for more than 10 minutes but one he realised that making himself sick got a response I couldn't leave him at all.

 

We always thought this loathing of sleep was to do with many months of an upset stomach and waking up in pain (before we removed gluten from his diet), but reading about Aspergers I can see we may have been wrong.

 

Perhaps this is something we just have to work through, perhaps by the end of the week he's be happier again, I hope so.

 

 

My son also vomitted easily. Is your son making himself sick, or is it an automatic reaction. For my son it was an automatic reaction with transitions, saying no, trying to take him out - infact anything he was unhappy about made him vomit. It did get better with time, but we also introduced time timer clocks so that he could see 'when' the TV would be turned off, or 'when' it was time for bed. I also introduced a count down as well, so when it was time to stop I would warn him, then slowly count down 1 - 2 - 3 and turn off TV/ move him etc. I also tried distracting him with singing, jumping, clapping, dancing - anything to take his mind of the situation and stop the vomitting.

He used to throw terrible tantrums. He also grew out of that to a large extent.

But consider that the transition might be part of the problem, in which case he needs verbal and visual warnings, frequent warnings that time for change is getting closer and then actual acount down to stop and move on.

[jaffacakes]

Thanks Suzie, I'll look for the support group in Sandbach. Cheshire Autism support were very helpful when I spoke to them, friendly and professional as well.

 

I've had two meetings today, both productive although I'm completely fried now. We've completed the CAF form and have a plan of action, which is a good start. Oh and it seems school have done less than I thought, all through the first meeting I was asked if school had done, a, b, c. Of course the answer to each was "No, what / who's that"

 

So progress and a few answers, and Ross has calmed down to, with the help of Ibuprofen. Poor sole has obviously eaten some gluten while we were at Centre Parcs - no wonder he was so unhappy.

 

So a glass of wine tonight I think ...

 

No reason for the Rabbit smilie, just wanted to use it

 

THanks everyone for your support, it's nice to feel I'm not going completely mad.

 

Lynn

[jb1964]

Hi Lynne,

 

My daughter has always suffered with bouts of aggressive behaviour (she's 16 now) and very little sleep - more often than not this has been linked into her level of anxieties - the more anxious she is the more she can't cope, can sleep and then becomes frustrated and gets angry or aggressive. Her anxiety levels rise with changes in routine but become extremely high with big new changes, ie. going to nursery, infants (change in teacher or pupils), juniors, comp etc (also someone being ill, someone dying, being made redundant, holidays and time off school - these have all affected her big-time).

 

Is there anything different in his life at the moment that could be causing his anxieties to increase.

 

Take care,

Jb x

Edited February 24, 2010 by jb1964

[cmuir]

Hi

 

I think there are a number of points that your post throws up.

 

Firstly, your son is very young. Sadly, the average age of a diagnosis is 9 according to NAS figures. That doesn't mean it's not possible for a dx to be made before that age though. My son was dx at 4.5. I think most will agree that a dx can be a long drawn out process and the reasons I guess are understandable. Mainly that a dx is often provided by a team of specialists ie SALT, OT, Paed, etc. Medication is a personal choice, but in my view, putting a child on medication pre-diagnosis may well mask ASD symptoms thus making it more difficult to diagnose (if that makes any sense). Also, specialists generally don't take medicating a child lightly and so often that's a fairly lengthy process too (much better just to go the whole hogg and look at the cause rather than the effect in my view). There are obviously other ways of looking at it though. I know very little about ritalin, risperidone, etc, but do know that they're not recommended for long term use and a child requires regular health checks ie ECGs, blood tests, blood pressure, etc. Melatonin is a natural hormone and helps to get off to sleep, but doesn't keep that person asleep. Again, some GPs won't prescribe as it's unlicensed in the UK.

 

I really feel for you. My son is now 8, but he was a nightmare at 4 and I'd often crumple to the floor and sit sobbing because I felt I couldn't take anymore. Firstly, I'd seek advise on how to manage your son's behaviour. In Scotland things are different to England and so I can't really advise what specific support, but I'm guessing there's something. I do know that some services aren't available until a dx is known, which is really frustrating. However, an Ed Psych should be involved and should be able to advise. Likewise, your GP should also be able to advise as well. Things like social stories (google Carol Gray) can help a great deal (can reduce anxiety as the child then knows what to expect, what's expected of them, etc). At the same time, I'd push for answers ie referral to a specialist. I found the whole process a massive emotional rollercoaster, but some good can come of out of it (I'm a much stronger person now than I was 4/5 years ago and that's because of my son).

 

Best of luck.

 

Caroline.

[jaffacakes]

Probably my lowest day yet. I have spoken to Cheshire Autism Support and basically said that I am struggling to cope - one thing I hoped I'd never say.

 

CAS have agreed to get involved as of now and will get various documents underway - I don't think they could do any more and have been very helpful.

 

Son spent 3 hours on PC games this afternoon after completely loosing it with a friends younger boy at lunch time. Luckily she does understand.

 

Very upset, worn out, and angry at the same time.

[latmaz]

jaffa just wanted to offer u some support, whilst my son is much older i can really sympathise with how u feel havin sat sobbing for an hour myself last night

 

 

its hard to know what is the over-riding emotion isnt it? upset cos our lovely boys seem out of control. anger that u arent getting enough support. guilt in case its something we did etc etc etc

 

i am sure these wonderful people on here will have some more concrete suggestions for you all i can do is offer u a couple of hugs from one who feels the same

x

[jaffacakes]

Thank you, sorry to hear you've had a rough time recently too, group hug required I feel. <'>

 

Please see: http://www.asd-forum.org.uk/forum/index.php?showtopic=23692

 

answers a few question for us, anyone else?

[latmaz]

definite group hug!!!

 

eek at the apple juice thing. Ds has been drinking this lately, its not something i usually buy i have to say but as he was enjoying it i bought more. wonder if orange is the same?

 

i did try my son wheat free but his dad refused to support it so i had to give up as i thought it was doing him more harm than good going from one house to the other

 

hope your day continues to improve

x

[jaffacakes]

definite group hug!!!

 

eek at the apple juice thing. Ds has been drinking this lately, its not something i usually buy i have to say but as he was enjoying it i bought more. wonder if orange is the same?

 

i did try my son wheat free but his dad refused to support it so i had to give up as i thought it was doing him more harm than good going from one house to the other

 

hope your day continues to improve

x

 

Wheat/gluten free is not easy. Has your son had a Coeliac test?

 

I suspect my son reacted so strongly as he has no other yeast, and yes citrus seems to be the same. It opens up a whole lot more questions for me ;-(

[trekster]

Wheat/gluten free is not easy. Has your son had a Coeliac test?

 

I suspect my son reacted so strongly as he has no other yeast, and yes citrus seems to be the same. It opens up a whole lot more questions for me ;-(

 

i found it very easy to go gluten free. i just had to resist the cravings for bread, cakes etc for 8 months. Thats without the malt and i ocassionally slip up when i have oats (forgetting they arent recommended on the autistic version of gf/cf).